Parents of children with congenital heart disease

Talking to your child about their heart

It can be difficult to know what to tell a toddler or a young child about their heart condition, their treatment or their operation. Suggestions for what to tell children, advice and information are available from various support organisations (see 'Resources and Information' section). The play therapist at the hospital may be able to offer advice.

Making hospital visits fun was one way parents helped their child to deal with what was happening to them. Describing the Echocardiogram as 'jelly belly'; 'sticky pads' for the ECG, and zipper to refer to their scar helped young children to be less afraid of tests or examinations. One mother referred to her daughter's pacemaker as 'Pacey'. Another was planning to buy a doctor's and nurse's kit to help prepare her 3-year-old for a future operation.

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Many parents had used simple language and had talked in stages to their child about their heart condition. They planned to provide more detailed explanations when their child was older. One mother had used science to help her 8-year-old son understand his heart condition, explaining, for example, that he couldn't be an astronaut because he had a pacemaker. Another had told her 5-year-old daughter that she had a heart murmur but she had not talked about the balloon catheter operation she had had as a baby.

Children who have had surgery as a baby are unlikely to remember what happened to them and may need explanations as to why they have a scar on their chest. One mother describes how she told her three-year-old daughter that she had had 'a broken heart' which the doctors had mended.

Some parents had shown their children photographs of themselves when they were in intensive care. Those who did, said their child had found it difficult to identify with the photographs at first. Some children wanted to take these photos in to school to show their friends or for school projects.

As children become older, parents wanted to make sure that their child was aware of the health risks of their heart condition. One mother of an eight-year-old son with hypertrophic cardiomyopathy describes how she found this difficult.

Some parents talked to their children about their forthcoming operations. Others chose not to. One couple felt it had been beneficial not to tell their three and a half year old son that he was going to have an operation while he was in hospital. Another describes the dilemma that she and her husband had and explains why she thinks it was a mistake not talking to her toddler about his operation.

The British Heart Foundation has a booklet 'Sammy's Heart Operation' which are aimed at 7-11 year olds and tells the story of a child’s visit to hospital for a heart operation it can be ordered from their website.

Heartline has two colouring books which also tell a story about children in hospital' 'Baby Bill' and 'Growly and the Outpatients Clinic'.

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Last reviewed July 2018.

Last updated July 2018.


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